The Space Omics and Medical Atlas (SOMA) and international astronaut biobank.

Spaceflight induces molecular, cellular, and physiological shifts in astronauts and poses myriad biomedical challenges to the human body, which are becoming increasingly relevant as more humans venture into space1-6. Yet, current frameworks for aerospace medicine are nascent and lag far behind advancements in precision medicine on Earth, underscoring the need for rapid development of space medicine databases, tools, and protocols. Here, we present the Space Omics and Medical Atlas (SOMA), an integrated data and sample repository for clinical, cellular, and multi-omic research profiles from a diverse range of missions, including the NASA Twins Study7, JAXA CFE study8,9, SpaceX Inspiration4 crew10-12, plus Axiom and Polaris. The SOMA resource represents a >10-fold increase in publicly available human space omics data, with matched samples available from the Cornell Aerospace Medicine Biobank. The Atlas includes extensive molecular and physiological profiles encompassing genomics, epigenomics, transcriptomics, proteomics, metabolomics, and microbiome data sets, which reveal some consistent features across missions, including cytokine shifts, telomere elongation, and gene expression changes, as well as mission-specific molecular responses and links to orthologous, tissue-specific murine data sets. Leveraging the datasets, tools, and resources in SOMA can help accelerate precision aerospace medicine, bringing needed health monitoring, risk mitigation, and countermeasures data for upcoming lunar, Mars, and exploration-class missions.

A day in the life of a clinical research coordinator: observations from community practice settings.

One of the goals of the NIH Roadmap Initiative is to re-engineer the national clinical research enterprise, with an emphasis on information technology solutions. Understanding end-users' workflow is critical to developing technology systems that are grounded in the context of the users' environment and are designed to fulfill their needs. Community practices are becoming the prevailing setting for conducting clinical research. Few studies have assessed clinical research workflow in such settings. We have conducted a series of investigations to model the workflow and have previously reported on some basic aspects of it, like the lack of information systems to support the workflow. In this paper we describe finer details of the workflow, using results of observational studies. These findings highlight the needs and inefficiencies that suggest the kind of information system that must be developed to enhance collaboration, communication and improve efficiency. This preliminary investigation also opens ground for more extensive studies to further elucidate the workflow.

What do patients search for when seeking clinical trial information online?

The Internet has become a common source for consumers to seek health information across a wide range of topics including searching for clinical trials. However, not much is known about what consumers search for in relation to clinical trials and how they formulate their search queries. In this study, we use log file data from TrialX.com, a consumer-centric website that provides clinical trial information to ascertain patterns in consumer queries. We analyzed semantic patterns in the queries by mapping query keywords to the UMLS Semantic Types and performed a manual evaluation of user paths. We found that the queries can be grouped into combinations of information needs related to condition, location and treatment. The results also suggested that the consumers using longer search queries with multiple Semantic Types are more likely to take action to participate in clinical trials. The study provides early insights that can be used to inform changes in website content and information display to improve clinical trials information seeking.

An evidence-based decision aid to help patients set priorities for selecting among multiple health behaviors.

To explore how patients and providers respond to Tailored Lifestyle Conversations (TLC), an evidence-based decision aid to help patients set priorities for selecting among multiple health behavior change goals, we conducted a study utilizing key informant interviews. Based on patient level assessment data, TLC presents tailored outputs that include 1) behavioral and clinical risk; 2) readiness and confidence scores for changing each of four behaviors; and 3) qualitative equations to elicit patient priorities for change. Patient priorities are documented in an action plan to be discussed with their provider during a clinical encounter. Interview questions probed how patients and providers responded to this output, and how heavily they valued the chance of success versus health benefit in deciding which behavior to work on first. The interviews also revealed how TLC might mediate the conversation around behavior change between patients and providers. TLC has potential to drive a more evidence based and patient centric approach to behavioral counseling in clinical settings.

GetHealthyHarlem.org: developing a web platform for health promotion and wellness driven by and for the Harlem community.

GetHealthyHarlem.org is a community website developed on an open-source platform to facilitate collaborative development of health content through participatory action research (PAR) principles. The website was developed to enable the Harlem community to create a shared health and wellness knowledgebase, to enable discourse about local and culturally relevant health information, and to foster social connections between community members and health promotion organizations. The site is gaining active use with more than 9,500 unique site visits in the six months since going live in November, 2008. In ongoing research studies, we are using the website to explore how the PAR model can be applied to the development of a community health website.

TLC: an informatics approach to enable patients to initiate tailored lifestyle conversations with providers at the point of care.

Chronic illness including cardiovascular disease (CVD) is a major burden on the healthcare system. Behavioral and lifestyle changes could significantly reduce the burden of CVD, but provider counseling for behavior change is a very challenging, and often ineffective task. We have developed a patient-centric decision support tool to be incorporated into an Electronic Health Record system (EHR). The tool provides tailored feedback on behavioral risk, readiness and confidence in an effort to empower patients to make decisions about improving health behaviors. In turn, the tool will facilitate an informed and balanced discussion between patients and their providers about behavioral changes, incorporating both the clinical view and the individual's preferences for choosing among multiple behavior change goals based on their psychosocial characteristics, and evaluation of benefits and barriers.

A tag based recommendation engine to suggest information resources in an online community for health promotion.

WEB 2.0 or the "social web" has created a new paradigm of collaborative information creation, organization and consumption. Among these, the social process of "tagging" has emerged as a bottom-up user-driven method to index content. We describe the use of tags as a way to connect users to resources in an online community that we are developing which utilizes social content creation and collaboration to promote health. Such connections are the basis of a recommendation engine that will suggest users a) other users who have similar health profiles, b) relevant information resources such as articles or blogs on health promotion and c) community resources such as local health facilities.

Re-engineering opportunities in clinical research using workflow analysis in community practice settings.

In this paper we examine frequently performed clinical research activities with the objective of identifying aspects of workflow that could be amenable to informatics-based re-engineering. This paper is part of a series of studies under the NIH Roadmap initiative, which examines workflow of clinical research in community practices. We describe three common work activities, detailing the main actors involved, the tools used and the challenges faced. These activities illustrate inefficiencies in the clinical research workflow which include: a) lack of supporting tools to perform routine work activities, b) redundancy, low reuse of data and poor interoperability between systems and c) the fragmented and distributed nature of the workflow. We identify opportunities for re-engineering at both a micro (activity) and macro level (organization).

Healthy Harlem: empowering health consumers through social networking, tailoring and web 2.0 technologies.

Consumer health informatics has emerged as a strategy to inform and empower patients for self management of their health. The emergence of and explosion in use of user-generated online media (e.g.,blogs) has created new opportunities to inform and educate people about healthy living. Under a prevention research project, we are developing a website that utilizes social content collaboration mediums in conjunction with open-source technologies to create a community-driven resource that provides users with tailored health information.

Extending electronic health records to improve adolescent health.

Electronic health records have been recognized as essential for improving clinical documentation, coordination, and management of health care in addition to lowering costs and improving patient safety. In recent years, there has been a significant impetus for promoting the adoption of electronic health records, as evidenced by the numerous public and private initiatives across the United States. However, currently available electronic health records have not focused on the unique clinical, psychosocial, and health educational needs and requirements of the adolescent age group. In this chapter we discuss briefly the history, development, and adoption of electronic health records and provide examples of how electronic health records can be extended to focus on the needs of adolescents and those who care for them.

Digital partnerships for health: steps to develop a community-specific health portal aimed at promoting health and well-being.

We describe the steps taken by the Harlem Health Promotion Center to develop a community-specific health web portal aimed at promoting health and well-being in Harlem. Methods and results that begin with data collection and move onto elucidating requirements for the web portal are discussed. Sentiments of distrust in medical institutions, and the desire for community specific content and resources were among the needs emanating from our data analysis. These findings guided our decision to customize social software designed to foster connections, collaborations, flexibility, and interactivity; an "architecture of participation". While, we maintain that the leveraging of social software may indeed be the way to build healthy communities and support learning and engagement in underserved communities, our conclusion calls for careful thinking, testing and evaluation research to establish best practice models for leveraging these emerging technologies to support health improvements in the community.

GODSN: Global News Driven Disease Outbreak and Surveillance.

Disease surveillance has evolved dramatically in the last few years, becoming more real-time, comprehensive and technology driven. As the Internet grows and evolves as a powerful information medium, the ability to mine real-time news feeds for disease surveillance has become viable. We propose a system, GODSN that monitors global news for disease outbreaks and surveillance. The system processes real-time news feeds using natural language processing to obtain disease information and the geographical reference to plot them on a geographic information system. GODSN provides an effective approach to visualize the spatial and temporal trends of infectious disease outbreaks or disease specific developments.

Modeling clinical trials workflow in community practice settings.

Clinical research is vital to the translation of biomedical knowledge into standard clinical practice. Efforts are underway under the NIH Roadmap initiative to re-engineer the national research enterprise to sustain the rapid pace of innovation in the biomedical domain. As part of these efforts, we have embarked on an empirical evaluation of clinical research workflow in community practice settings. The reasons for this focus are three-fold. First, there is an increasing tendency by trial sponsors to conduct clinical trials in community, rather than academic, settings. Second, understanding workflow is critical to developing re-engineering strategies. Third, workflow associated with the conduct of clinical research in community practices have received virtually no attention in the scientific literature. In this paper, we describe a pilot study using time-motion observations, to determine the workflow of clinical research coordinators, the tools they use to conduct the constituent activities of those workflows, and their ultimate outcomes. The preliminary findings provide insights and understanding of clinical research workflow in community practice settings - knowledge that may significantly impact the way in which information technology based re-engineering can be deployed in such an environment.